SURVEY RESULTS: Antidepressants for ME/CFS and Fibromyalgia

Note: This survey is still open. Your input is important! You can fill out the survey HERE.

Last month editors Karen Lee Richards and Erica Verrillo posted a ProHealth survey: Antidepressants for ME/CFS and Fibromyalgia. Results of the survey can be viewed HERE.

The reasons for conducting this survey were twofold.

Antidepressants are among the most commonly prescribed medications for people with both Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME), sometimes predating the actual diagnosis of the illness. For FM, the antidepressants Cymbalta (duloxetine) and Savella (milnacipran) are two of three FDA-approved treatments, and are therefore in wide use.

In spite of the widespread use of these medications, there are relatively few studies of their efficacy or safety for this population. Doctors who have prescribed antidepressants to their FM and CFS or ME patients have noted inconsistent responses to these drugs, with roughly one-third reacting poorly. This finding was borne out in the 2008 survey conducted by the ME Association in Great Britain, in which 30%-38% of respondents reported that antidepressants, of all classes, made them feel worse.

Results

Of the 207 people who filled out the ProHealth survey, 52% stated that they had ME or CFS, 81% reported having FM, and 22% reported other ailments, such as migraine and Lyme disease. This means is that there are many comorbidities among people with FM and ME or CFS (i.e. people may have two or more diagnoses). What is interesting is that none of the respondents had been diagnosed with depression.

Of these patients, the majority (60%) had been ill longer than 10 years and were moderately severe to moderately ill (3-6 on the rating scale). Very few were either severely ill (bedridden), or mildly ill. The majority (54%) had taken antidepressants for more than 5 years at standard doses (59%). Nearly a third (31%) had taken antidepressants at higher than standard doses. The long-term use of antidepressants at standard doses implies that physicians are prescribing these drugs to patients with ME, CFS or FM as they would to patients with major depression.

Of the 20 antidepressant medications listed, there wasn’t one that had not been tried by the respondents. In fact, each antidepressant listed had been taken by a significant portion of the respondents (range of 32% to 66%), with an average of 9 different prescription antidepressants per person. (Not all antidepressants were on the list - there are more than 60 - but the most common medications in each class of antidepressant were represented, indicating that physicians are prescribing a broad range of antidepressant medications to the FM/CFS/ME patient population.)

The least prescribed medication was Trimipramine (Brand: Sermontil), which had been taken by roughly a third of the respondents. The tricyclic, Elavil, was the most commonly prescribed medication, taken by 66% of the respondents. Cymbalta (duloxetine) had been taken by 65% of the respondents. The broad range and variety of antidepressants taken by resondents means that over a 5-year or more period of illness, moderately ill ME/CFS or FM patients may have been prescribed more than one antidepressant a year over the course of the illness.

How antidepressants affect people with FM, ME and CFS

For each of these medications, the majority of respondents reported that the antidepressant either had no effect on the illness (4% - 23%), or that they could not determine what effect it had (17% - 95%). (The inability to determine the effect of an antidepressant is most likely due to the fact that side effects of antidepressants mimic many of the symptoms of FM, ME and CFS.) This means that, across the board, antidepressants don’t appear to exert an effect on the illness that is either distinctly positive or negative. Roughly half of the antidepressants on the list made patients feel worse. Of those, Elavil, the most commonly prescribed antidepressant, and Prozac topped the list for making patients feel significantly worse. Cymbalta was the highest rated antidepressant, with 24% of the respondents reporting that it made them feel significantly better. In only two cases, however, did more than one-third of the respondents report that an antidepressant had led to an improvement. One-third of the respondents also said antidepressants made them feel worse.

Side effects were experienced by nearly all respondents (94%). The most commonly reported side effects were: weight gain (64%), fatigue (56%), dry mouth (55%), brain fog (54%), loss of libido (50%), and loss of emotions (46%). These correspond to the side effects most often found in the general population. But many less common side effects were reported as well, including hallucinations, unusual lactation, insomnia, paranoia and mania. An alarming percentage of respondents reported depression (35%) and suicidal thoughts (21%) as well as tardive dyskinesia (16%) a neurological disorder that has been linked to long-term, and sometimes even short-term, administration of antidepressants. One respondent reported severe withdrawal symptoms from Cymbalta after taking 40 mg for about 9 months.

The bottom line

When asked to rate antidepressants compared to other treatments, the majority of respondents said antidepressants were among the least effective treatments they had tried (56%). 38% gave antidepressants the least favorable rating (1), which corresponds to the figure in the ME Association survey. Of those who gave antidepressants a favorable rating, only 11% rated antidepressants in the category of most helpful.

In a nutshell

Every class of antidepressants is widely prescribed to patients with FM, ME and CFS, usually for a long period of time.

Antidepressants, with a couple of exceptions, appear to benefit as many people as they harm, but the people in either camp are in the minority.

In the majority of patients, antidepressants have no discernible effect on the illness.

Nearly everyone with FM, ME and CFS experiences side effects while taking antidepressants, some of which are quite severe.

Over half of the respondents indicated that antidepressants were among the least effective treatments they had tried

I have been diagnosed with Fibro for over 20 years now. I have tried a number of antidepressants with little to no success. I have come to the conclusion that I just don't have any answers. I have currently been plagued by a spasm that runs from my neck to my left shoulder with multiple knots in the muscle. It is severe enough that it causes me nausea at the worse times. I get severely depressed at times and quite honestly don't know how I have managed this long. I just lost my wife who for the last two years has been mocking me and calling me crazy. She says I take too many pills but I have never taken a single one more than the doctor prescribed. After she started making a practice of hitting me I left and filed for a divorce. She promptly locked me out of my house and filed a restraining order that was made up of nothing but lies but my attorney said that because I was a man I was sure to loose a contest of the RO. The last time I saw him he appeared visibly angry at me because I was continuing with these problems despite blood work that should keep me going forever. I dread the thought of that!! I honestly don't know how much longer I can handle this pain. I was hoping to discuss the possibility of some kind of direct injection into the muscle to get it to let go but he started jerking my neck around and I pretty much shut up after that. I am on Medicare and I suspect that is why he was mad. They barely pay anything. I am 90% disabled with the VA but the doctors (most PA's) just laugh when you mention fibro treatments. They can't handle the work load they have now and would give me physical therapy but I would have to drive 175 miles one way to get it. I have heard if an ongoing study with NEUROTROPIN that has had very positive results, anyone know how to get in on this study? The sponsor is the National Institute of Nursing Research (NINR).

Read more: The Next Generation of Fibromyalgia Treatments – The Clinical Trials http://www.cortjohnson.org/blog/2013/11/11/next-generation-fibromyalgia-treatments-clinical-trials/

Read more: The Next Generation of Fibromyalgia Treatments – The Clinical Trials http://www.cortjohnson.org/blog/2013/11/11/next-generation-fibromyalgia-treatments-clinical-trials/ it. I read of an experimental drug treatment going on with

I have been prescribed probably every drug available in the class. The only one tolerable is Elavil. It does have annoying side effects that new go away with longer term use. One is constant dry mouth & hoarseness of voice. The other is difficultly urinating in the morning if taking an evening dose. The positive side is it does help me sleep longer & fall asleep faster. It also seems to lesson the frequency & severity of migraine headaches. Especially when paired with a beta blocker metoprolol, I take for high BP. A gentlemen mad a comment on this article & asked about medication being applied by injection to his specific areas of pain. That is available & called a trigger point injection. My fibro doc is a Physical Medicine & Rehabilitation Specialist. He offers the injections. For those squeamish about needles, a good certified massage therapist, medical message therapist or physical therapist can release the trigger spots temporarily. If you feel you want longer term relief & can tolerate injections it should give most patients at least some relief. This illness is so frustrating. Nothing seems to work for any length of time. We also still have credibility issues despite our growing numbers of people with this puzzling pain syndrome. I believe fibromyalgia is a hyper vigilant central nervous system disorder & that is why is manifests differently in each patient. I think after the body is screaming at us to stop the pain with no success, an autoimmune & adrenal response occurs, making diagnosis & successful treatment even more unlikely.